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Thread: New to bracing, and it's not going well :(

  1. #1
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    New to bracing, and it's not going well :(

    I'm sorry if this thread is redundant, but there's so much info here that I can't zero in on my same situation. My daughter has an S curve, with the worst part being 33 degrees. She is 12 1/2 and her growth plates are still at 0. We just picked up her hard-shell brace Tuesday (I don't even know the proper term, but it comes up high under one arm, just under the chest, down to the hip bones, and has 3 velcro straps in the back).

    The appointment where she tried it on seemed to go okay (and I practiced putting the brace on her once), but when I put it on her last night, it was SO hard to tighten the straps, and she was SO upset! She acted as if she wished she could rip it off, and said it was uncomfortable to stand or sit. She finally laid on her bed in it and cried herself to sleep, and I woke her up an hour later. Of course she had horrible red indentations on her skin, and she said her back hurt even more when we took it off. I don't think she was just having a temper tantrum, as her attitude has been strong and positive up until this point (other than the initial depression upon diagnosis).

    Did any of you or your children have such an unpleasant beginning with your bracing? Thank so much for any experience you can share!

  2. #2
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    Hi - sorry your daughter is having trouble with the brace. It kind of sounds like she's wearing the boston brace. My daughter wore one for 3 years. I remember the first weeks being really hard. We had to go back to the orthotist several times and it really never got comfortable. My daughter had to wear it 20 hrs a day to start with and I think that maybe if she could have started wearing it a few hours a day and then gradually work up to the 20 hrs, it might have been easier. My daughter did eventually get used to it, although we were never able to tighten it quite as much as the orthotist did. My daughter wore the brace shirts that the orthotist gave her to wear under the brace, which made it a little more comfortable. Is your daughter wearing the brace shirts? Near the end of her 3 years of wearing that brace, my daughter developed the muscle atrophy - she had a lot of pain when she would take the brace off.

    My daughter is now wearing the LA brace and she has to wear it really tight too, but she's finding it easier. I don't know why except that maybe it's just because she was so used to wearing the other brace for so long. She has gotten better correction with this brace.

    We are trying to avoid surgery because my daughter is a ballet dancer and the surgery would really decrease her flexibiity. That alone is the motivation that she needs to wear her brace. I don't think any brace is going to be very comfortable. My daughter has plenty of red marks on her body to prove that!! I do wish you luck with this and I hope that it will get easier for the both of you!!!

  3. #3
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    Quote Originally Posted by scolio1964 View Post
    Hi - sorry your daughter is having trouble with the brace. It kind of sounds like she's wearing the boston brace. My daughter wore one for 3 years. I remember the first weeks being really hard. We had to go back to the orthotist several times and it really never got comfortable. My daughter had to wear it 20 hrs a day to start with and I think that maybe if she could have started wearing it a few hours a day and then gradually work up to the 20 hrs, it might have been easier. My daughter did eventually get used to it, although we were never able to tighten it quite as much as the orthotist did. My daughter wore the brace shirts that the orthotist gave her to wear under the brace, which made it a little more comfortable. Is your daughter wearing the brace shirts? Near the end of her 3 years of wearing that brace, my daughter developed the muscle atrophy - she had a lot of pain when she would take the brace off.

    My daughter is now wearing the LA brace and she has to wear it really tight too, but she's finding it easier. I don't know why except that maybe it's just because she was so used to wearing the other brace for so long. She has gotten better correction with this brace.

    We are trying to avoid surgery because my daughter is a ballet dancer and the surgery would really decrease her flexibiity. That alone is the motivation that she needs to wear her brace. I don't think any brace is going to be very comfortable. My daughter has plenty of red marks on her body to prove that!! I do wish you luck with this and I hope that it will get easier for the both of you!!!
    Is the brace meant to be worn only at night? If so, it's not a Boston brace.

    What you and your daughter went through last night is, unfortunately, pretty normal. All I can say is that it does get better.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  4. #4
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    Unhappy

    Quote Originally Posted by scolio1964 View Post
    Is your daughter wearing the brace shirts? Near the end of her 3 years of wearing that brace, my daughter developed the muscle atrophy - she had a lot of pain when she would take the brace off.

    We are trying to avoid surgery because my daughter is a ballet dancer and the surgery would really decrease her flexibiity. That alone is the motivation that she needs to wear her brace. I don't think any brace is going to be very comfortable. My daughter has plenty of red marks on her body to prove that!! I do wish you luck with this and I hope that it will get easier for the both of you!!!
    Thanks very much for you reply. Yes, my daughter was given some sleeves to wear inside the brace. She is gradually working up to the 23 hours/day, so that is good, but I never expected her to be so uncomfortable! She will likely have to wear this thing for a few years since she still has so much growing to do. It scares me to hear that your daughter developed muscle atrophy despite being a dancer! My daughter is also a dancer, and I thought those hours dancing out of the brace was supposed to keep her strong and flexible.

    In the beginning, we were afraid and pictured the brace as being horrible. Then when we saw it, it wasn't as bad as we thought. But now that she has to actually wear it and she is miserable, and I question how effective it will even be for her...this is all just very depressing.

    Will your daughter's red marks eventually fade?

  5. #5
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    Quote Originally Posted by LindaRacine View Post
    IsWhat you and your daughter went through last night is, unfortunately, pretty normal. All I can say is that it does get better.

    --Linda
    Thanks for your words of encouragement, Linda. I hope it gets better soon. Inside, I feel so sad for my daughter.

  6. #6
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    @scolio1964, I meant to ask, after 3 years, what effect did the brace have on your daughter's curve?

  7. #7
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    Hey! You can try to over the counter pain meds. I gave my daughter some pain meds for the first several days she was getting used to her night-time brace and it was a big help.

    There is no reason to suffer any more than necessary.

    Good luck.

    ps. Did you get a Scoliscore for your daughter?
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #8
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    Question

    Quote Originally Posted by Pooka1 View Post
    ps. Did you get a Scoliscore for your daughter?
    Tylenol makes sense, I guess, thanks! And no, I guess I didn't since I don't really know what that is!

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    Quote Originally Posted by BaltoMom View Post
    Tylenol makes sense, I guess, thanks! And no, I guess I didn't since I don't really know what that is!
    The pain meds really helped my kid until she got used to the brace.

    It's a genetic test that is very accurate for predicting which curves will not be greater than 40* at maturity. This group will be about 75% of the AIS cases in adolescent girls.

    It is calibrated for a particular population of girls of a specific age. You can ask you surgeon if your daughter should have the test and how the results should be viewed.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  10. #10
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    Quote Originally Posted by Pooka1 View Post
    It's a genetic test that is very accurate for predicting which curves will not be greater than 40* at maturity. This group will be about 75% of the AIS cases in adolescent girls.
    .
    I did ask the surgeon about a DNA saliva test at our first consultation, but he said in our case it was not helpful. I guess since my daughter's curve is already 33 on the bottom of the S, and her growth plate is 0, they are assuming it will definitely progress and would not change the treatment at this time. Too young for surgery, but the brace is supposed to keep the curve from worsening. 'Gonna be a long road.... :/ I know it could always be worse, but hard to face nonetheless.

  11. #11
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    Okay.

    Did the surgeon mention vertebral body stapling? If she has lots of growth left, that would get your daughter out of the brace potentially.

    Here's an informational web site run by parents including Maria and others on this forum. You can ask questions if you have any.

    http://www.vertebralstapling.com/

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #12
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    Unfortunately, the ScoliScore cutoff is 25 degrees, so a curve of 33 degrees would not be eligible for the test.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  13. #13
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    Quote Originally Posted by LindaRacine View Post
    Unfortunately, the ScoliScore cutoff is 25 degrees, so a curve of 33 degrees would not be eligible for the test.
    (Edited) Yes this is correct.

    http://scoliscore.com/Default.aspx?a...coliscore-test

    * Adolescent Idiopathic Scoliosis
    * Ages 9-13 years
    * Self reported Caucasian males and females (North American, South American, European, Eastern European, Middle Eastern)
    * Mild Curve (10 - 25 Cobb angle)

    So I'm not sure what this means. Does it mean kids in this group with curves > 25* are all likely heading for surgery? That sounds wrong.
    Last edited by Pooka1; 05-05-2011 at 05:03 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #14
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    Quote Originally Posted by Pooka1 View Post
    ( Does it mean kids in this group with curves > 25* are all likely heading for surgery? That sounds wrong.
    Our doctor at Johns Hopkins said that they don't normally do surgery until it's about 50 degrees. I thought the cut off was 40, but apparently not. But IF her brace keeps her curves where they are now, I guess she is supposed to live her life as is. She is experiencing a lot more back pain in the last 6 months than ever before, but it's hard to tell if it is from dance or the scoliosis. I just don't want her to live with pain all her life.

  15. #15
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    What I was trying to get at is that there is ground between 25* (the top of the eligibility for the test) and 40* (the cut off result from the test).

    Some people in this range will progress to >40* and some won't. It seems like their test could tell who is in which group but they won't allow people in this group to take the test. It is almost as if they are assuming all the people in this range will end up >40* so they don't need the test. But we know that isn't correct. So I'm still confused.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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